Aa
fever and lyme or something else?
I'm just looking for some feedback on my Western blot results and ongoing health concerns. I am 34 years old and was in a rustic area of Canada over the summer. About a week later I started experiencing strange neurological problems including a lot of tingling and numbness in arms, legs and face. I also have had a low grade fever, highest being 100 degrees for about five months. I've had some head pressure, stiff jaw and electric like feeling in my body. I ended up getting an IgeneX blood test and came up with these results:
IGM: 39 IND, 41++, 45+, 58+ and on IGG I had 39 IND and 41+. I have been taking antibiotics for about five months and I still don't feel good. I'm starting to wonder if this is indeed lyme. Thinking back, I think I felt better a couple months ago and now seem to be getting worse again. Any suggestions on my test results? I am considered negative on paper, but I know that doesn't always mean much. Any advice, or similar experiences that one could share would be appreciated. Thanks!
IGM: 39 IND, 41++, 45+, 58+ and on IGG I had 39 IND and 41+. I have been taking antibiotics for about five months and I still don't feel good. I'm starting to wonder if this is indeed lyme. Thinking back, I think I felt better a couple months ago and now seem to be getting worse again. Any suggestions on my test results? I am considered negative on paper, but I know that doesn't always mean much. Any advice, or similar experiences that one could share would be appreciated. Thanks!
Hi. I was wondering if anyone has experienced head pressure with their lyme? Not necessarily pain, but a pressure sensation. I notice mine either in the base of the skull or the top of the head, as if a rubber band is around my brain. Thanks!
Sounds like the 'babs' is still kicking, then. It's good that the docs picked up on that, and when a doc does something like that, my estimation of their skills and awareness goes up a notch. I was on zith and Mepron (which is similar to Malarone, but I can't tell you in what ways) for at least 4 months, don't remember anymore. I was much, much better when the babs was gone. I think I had a low level case of Lyme before getting the babs and a likely new dose of Lyme, so I got the double whammy. Everybody's different, and the combos of diseases confuse the diagnostic and treatment picture, so it's good news that your doc is paying attention and taking action.
When you ask your doc about possible other coinfections, I would expect a reasonable answer to be 'No, because you haven't exhibited particular symptoms of the other possibilities.' Because I tend to sublimate annoying symptoms and don't know they are relevant or significant, I sometimes ask docs to rattle off a list of possible symptoms I may be overlooking. The docs hate doing that, because they figure it will just give a hypochondriac a shopping list of symptoms. I try to persist, and explain that I often ignore things and just want to be sure I haven't missed reporting something that doesn't seem significant to me. Sometimes they bite, sometimes they don't. I also will spend ~a week before an appointment carefully watching my symptoms and taking notes of every little thing that I feel and then analyze the list before I go to the doc, so I can mention anything that seems unusual compared to my previously healthy life ... but it's been so long since then that it's hard to remember, y'know?
I do keep a (nearly) daily log of what I eat, what meds and supplements I take, and how I feel, esp anything out of the ordinary. Most docs don't want to read something like that, but it helps me look back over time and see changes so I can comment on them at the appointment. I've been keeping the log for a couple of years now, just for my own amusement, but also because my memory was so spotty that I would totally forget things that happened. Now before I go to the doc, I'll do a quick review of my log, make some brief notes of trends or new events (good and bad), and be up to date with my info at the appointment. (The doc I am seeing now is not a Lyme doc but understands Lyme and the mess it makes of one's life and brain and body, and she [bless her heart] actually READS my log if I send it to her a few days before my appointment! She says it gives her important data over the long haul.)
About band 58, the only thing that comes to mind is the list of bands and their possible meanings I have taped to the kitchen door from truthaboutlymedisease [dot] com. It's 18 months old at this point, but it says that band 58 is "unknown but may be a heat shock protein of Bb" ... which I am guessing means that it's a messed up indicator of Lyme but they're not sure. There may be more recent data that your doc is referring to. You could also google/search it and see what you find. I just did that, and one of the 'hits' was on the Canadian Lyme site 'canlyme'. Someone had posted their test results, and one of the commenters said to a woman who has been ill for decades:
"... band 58+ is the gold standard for Tertiary Lyme... meaning this is a long standing infection in your body that your body is still fighting (+IgM). From the 2009 article from the U of Calgary -Dept. of Biological Sciences Canadian Entomology Vol. 14:1: 'This has resulted in improved management of patients, and it is now recognized that the 58-kilodalton protein is a highly specific indicator of infection by B. burgdorferi' "
I have not looked up that medical journal to read more about it, but if you're interested, there's a lead for you. All I did was google the following: lyme "band 58"
I'm not familiar with pulsar or footbath treatments, so can't comment. I have read some about Rife machines, which as I understand it runs a specific electrical frequency through the body to disrupt and kill specific bacteria (i.e., Bb aka Lyme). I thought it sounded insane the first time I read about it, but as the years go by .... well, you know. Strange stuff starts to sound intriguing. Desperate times, desperate measures, and all that.
It is true, I believe, that 'modern' medicine lacks much knowledge about Lyme, and part of the problem is that the docs who first discovered it have failed to progress beyond their initial discovery. It would be like Columbus landing on Hispaniola in 1492 and declining to venture further -- exclaiming "Look at what I already found!" -- and forever after insisting that the New World is simply a tropical island and no one need look farther.
Thank heaven for the internet, or we'd be in a bigger mess than we are. :)
Take care, let us know how you do, okay?
When you ask your doc about possible other coinfections, I would expect a reasonable answer to be 'No, because you haven't exhibited particular symptoms of the other possibilities.' Because I tend to sublimate annoying symptoms and don't know they are relevant or significant, I sometimes ask docs to rattle off a list of possible symptoms I may be overlooking. The docs hate doing that, because they figure it will just give a hypochondriac a shopping list of symptoms. I try to persist, and explain that I often ignore things and just want to be sure I haven't missed reporting something that doesn't seem significant to me. Sometimes they bite, sometimes they don't. I also will spend ~a week before an appointment carefully watching my symptoms and taking notes of every little thing that I feel and then analyze the list before I go to the doc, so I can mention anything that seems unusual compared to my previously healthy life ... but it's been so long since then that it's hard to remember, y'know?
I do keep a (nearly) daily log of what I eat, what meds and supplements I take, and how I feel, esp anything out of the ordinary. Most docs don't want to read something like that, but it helps me look back over time and see changes so I can comment on them at the appointment. I've been keeping the log for a couple of years now, just for my own amusement, but also because my memory was so spotty that I would totally forget things that happened. Now before I go to the doc, I'll do a quick review of my log, make some brief notes of trends or new events (good and bad), and be up to date with my info at the appointment. (The doc I am seeing now is not a Lyme doc but understands Lyme and the mess it makes of one's life and brain and body, and she [bless her heart] actually READS my log if I send it to her a few days before my appointment! She says it gives her important data over the long haul.)
About band 58, the only thing that comes to mind is the list of bands and their possible meanings I have taped to the kitchen door from truthaboutlymedisease [dot] com. It's 18 months old at this point, but it says that band 58 is "unknown but may be a heat shock protein of Bb" ... which I am guessing means that it's a messed up indicator of Lyme but they're not sure. There may be more recent data that your doc is referring to. You could also google/search it and see what you find. I just did that, and one of the 'hits' was on the Canadian Lyme site 'canlyme'. Someone had posted their test results, and one of the commenters said to a woman who has been ill for decades:
"... band 58+ is the gold standard for Tertiary Lyme... meaning this is a long standing infection in your body that your body is still fighting (+IgM). From the 2009 article from the U of Calgary -Dept. of Biological Sciences Canadian Entomology Vol. 14:1: 'This has resulted in improved management of patients, and it is now recognized that the 58-kilodalton protein is a highly specific indicator of infection by B. burgdorferi' "
I have not looked up that medical journal to read more about it, but if you're interested, there's a lead for you. All I did was google the following: lyme "band 58"
I'm not familiar with pulsar or footbath treatments, so can't comment. I have read some about Rife machines, which as I understand it runs a specific electrical frequency through the body to disrupt and kill specific bacteria (i.e., Bb aka Lyme). I thought it sounded insane the first time I read about it, but as the years go by .... well, you know. Strange stuff starts to sound intriguing. Desperate times, desperate measures, and all that.
It is true, I believe, that 'modern' medicine lacks much knowledge about Lyme, and part of the problem is that the docs who first discovered it have failed to progress beyond their initial discovery. It would be like Columbus landing on Hispaniola in 1492 and declining to venture further -- exclaiming "Look at what I already found!" -- and forever after insisting that the New World is simply a tropical island and no one need look farther.
Thank heaven for the internet, or we'd be in a bigger mess than we are. :)
Take care, let us know how you do, okay?
Thanks for getting back to me. I did just hear back from my doctor and they are putting me back on Zithromax and Malarone and stopping the Doxy. I wasn't tested for any other coinfections other than Babesia, but that is one of my questions at my next office visit.
I have a couple other questions for you. It sounds like you are very knowledgable and have been dealing with Lyme for a long time (lucky you). :)
Have you ever tried any of the pulsar treatments or cell cleansing footbathes as part of your lyme treatment?
Have you heard any new information on band 58? My LLMD said it was bb specific, however, I can't find that in any of the information on line. Just curious what you or anyone else out there has heard about this band.
Thanks again!
I have a couple other questions for you. It sounds like you are very knowledgable and have been dealing with Lyme for a long time (lucky you). :)
Have you ever tried any of the pulsar treatments or cell cleansing footbathes as part of your lyme treatment?
Have you heard any new information on band 58? My LLMD said it was bb specific, however, I can't find that in any of the information on line. Just curious what you or anyone else out there has heard about this band.
Thanks again!
Treatment for Babesia is indeed different from treatment for Lyme. I too took Zithromax (generic: azithromycin) and Mepron (generic: atovaquone, which is sometimes also under the brand name Mepron). My doc treated the Babesia first, for something like four months, and then moved to treat Lyme with different antibiotics (amoxicillin and something else I don't currently recall, but not doxy). Every doc does things differently and with different meds in different combinations for different lengths of time, so it's hard to know what is right for each person.
I don't know about Babesia tests coming back negative, but for Lyme tests, it happens that the body gives up making antibodies after a while, and the tests that look for the antibodies will come back negative, indicating no infection when in fact it can be continuing.
As you can see there are many moving parts to diagnosis and treatment, and each person can react differently based on body chemistry, other medical conditions, etc., so there's no 'one size fits all.'
That said, what does your doc say about you feeling worse lately? Any explanation?
One of the things nonLLMDs do that may be problematic is treat for a short period of time. That works for the regular bacteria that bring earaches and other similar infections, but Lyme bacteria have a characteristic that they reproduce very slowly, and it is during reproduction that bacteria are most susceptible to antibiotics. Therefore two weeks of abx works for an earache, but not for a Lyme infection. I don't know about Babesiosis in that regard ...
There are many questions that could be asked: do you have other coinfections that you were not tested for (bartonella, Ehrlichiosis); was the babesia completely cured; is doxy the right drug for you at this point; and other things I can't think of ... no one here (esp. me) is medically trained that I know of, so it's not possible to tell you what to do, only what directions we ourselves might go in.
In your situation, I'd read as much as I could, esp. Burrascano's 'Diagnostic Hints and Treatment Guidelines' to see if anything catches your eye, some symptom you hadn't thought to report, or whatever, and then go visit with your doc for a 'now what do we do' session. You may have another coinfection, or your earlier one(s) were incompletely treated, or ... something else. Sorry not to be of more help, but educating yourself and asking questions and pursuing them with your doc is the only thing I can recommend.
Above all: if you know you don't feel right, don't quit asking questions and pressing ahead. Even get a second opinion if you feel you've reached a dead end with your current doc, but he sounds like he's oriented in the right direction, so keeping on with him doesn't sound like a bad idea at least for now.
Let us know what you find out, okay? I hope you feel lots better very very soon --
I don't know about Babesia tests coming back negative, but for Lyme tests, it happens that the body gives up making antibodies after a while, and the tests that look for the antibodies will come back negative, indicating no infection when in fact it can be continuing.
As you can see there are many moving parts to diagnosis and treatment, and each person can react differently based on body chemistry, other medical conditions, etc., so there's no 'one size fits all.'
That said, what does your doc say about you feeling worse lately? Any explanation?
One of the things nonLLMDs do that may be problematic is treat for a short period of time. That works for the regular bacteria that bring earaches and other similar infections, but Lyme bacteria have a characteristic that they reproduce very slowly, and it is during reproduction that bacteria are most susceptible to antibiotics. Therefore two weeks of abx works for an earache, but not for a Lyme infection. I don't know about Babesiosis in that regard ...
There are many questions that could be asked: do you have other coinfections that you were not tested for (bartonella, Ehrlichiosis); was the babesia completely cured; is doxy the right drug for you at this point; and other things I can't think of ... no one here (esp. me) is medically trained that I know of, so it's not possible to tell you what to do, only what directions we ourselves might go in.
In your situation, I'd read as much as I could, esp. Burrascano's 'Diagnostic Hints and Treatment Guidelines' to see if anything catches your eye, some symptom you hadn't thought to report, or whatever, and then go visit with your doc for a 'now what do we do' session. You may have another coinfection, or your earlier one(s) were incompletely treated, or ... something else. Sorry not to be of more help, but educating yourself and asking questions and pursuing them with your doc is the only thing I can recommend.
Above all: if you know you don't feel right, don't quit asking questions and pressing ahead. Even get a second opinion if you feel you've reached a dead end with your current doc, but he sounds like he's oriented in the right direction, so keeping on with him doesn't sound like a bad idea at least for now.
Let us know what you find out, okay? I hope you feel lots better very very soon --
I started on Doxy and then was switched over to Zithromax and Malarone as my skin was burning on the Doxy during the summer. On December 2 I was switched back to Doxy, but a lower dose.
I was tested for babesia as my doc was treating me for that due to the low grade fevers. I seemed to be getting better back in October and November, however, I feel aweful again.
I live in Michigan, however, I suspect I might have gotten Lyme while vacationing in Ontario Canada.
Thanks!
I was tested for babesia as my doc was treating me for that due to the low grade fevers. I seemed to be getting better back in October and November, however, I feel aweful again.
I live in Michigan, however, I suspect I might have gotten Lyme while vacationing in Ontario Canada.
Thanks!
Welcome to MedHelp --
Sorry to hear you are still not seeing improvement.
What medications are you taking, and have they been changed since the treatment started?
Were you tested for co-infections, other diseases often carried by the Lyme ticks?
What part of the US do you live in?
Let us know and we might have some ideas, tho we're not medically trained, just been in the trenches of Lyme.
Take care --
Sorry to hear you are still not seeing improvement.
What medications are you taking, and have they been changed since the treatment started?
Were you tested for co-infections, other diseases often carried by the Lyme ticks?
What part of the US do you live in?
Let us know and we might have some ideas, tho we're not medically trained, just been in the trenches of Lyme.
Take care --
Have an Answer?
You are reading content posted in the Lyme Disease Community
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Can HIV be transmitted through this sexual activity? Dr. Jose Gonzalez-Garcia answers this commonly-asked question.
A breakthrough study discovers how to reduce risk of HIV transmission by 95 percent.
Dr. Jose Gonzalez-Garcia provides insight to the most commonly asked question about the transfer of HIV between partners.
Before your drop a dime at the pharmacy, find out if these popular cold and flu home remedies are a wonder or a waste
Fend off colds and the flu with these disease-fighting foods
